Tuni will need to have her heart repaired. She has a congenital heart condition, a variation of a Tetrology of Fallot. Every medical student learns about it, almost like a rite of passage. In those days there was only palliative care, surgical procedures to extend life. Now there is surgery to FIX it! In time Tuni will have this surgery. The doctors here prefer to wait until the children are a year old when the survival rate is higher. If she develops symptoms, like cyanosis, or her development doesn’t progress, then we will have to do it sooner. For now we just feed her up, keep her happy, and watch.

We have been scouring the few papers that came with her. I was trying to find out why she was originally admitted to the hospital last April. I would like to know her weight at the time, and what symptoms presented. But in looking into the papers, the story we had been told didn’t seem to make sense. If she was brought in by her family then why was she “unknown baby” from the beginning? She would have been admitted under a name. Then we found in the police papers that THEY had been the ones to try to contact the family, including by email. Or, maybe those are just the standard words used for a baby found somewhere. I saw this in adoption papers all the time, words about an unmarried young woman abandoning her child… The words were exactly the same in each file. But for the adoptee the words were specific and personal. Those words became part of their narratives.

If you read my last post, and comments on fb, we tend to create narratives, weaving together a few facts with many speculations. Was the family poor? Did they know she had Down’s? Were they all agreed or was the mother mourning? In fact, we have no idea whatsoever. Maybe we will find out one day.

Earlier this evening I was talking to Tuni, tickling her, making funny faces… She is so responsive, so happy for smiles. Anyway, I told her I thought she must have a really interesting book to write — about her life… about being here and there, about hospitals, and police, and she just giggled and giggled as if she understood every word.

Like this:

Tuni is her name, but I added “Harrison” as I do for the kids with disabilities who have no surnames. Having a chart read, “Baby Tuni” is not as good as “Tuni Harrison.”

Tuni is about seven months and has Down Syndrome. At about three months of age she was hospitalized in a government hospital about four hours from Kolkata. I don’t have records of why she was hospitalized, but we were told her family never came back for her and never responded to calls from the hospital. That district has no facilities for children with disabilities, and was one of the children the Child Welfare Committee pleaded with me to take. We picked her up last week, on Friday, the 19th of July. I knew in taking a child with Down there was a possibility she would have other medical problems including heart disease.

Today I took her to Medica Superspecialty Center to see the pediatrician for a check-up and to start whatever investigations were in order. Tuni was a charmer. Yes, she has heart disease. She was seen by the pediatric cardiologist, the same one who saw Ganga in the past. He did a brief echocardiogram, enough to see that she has a “complicated heart situation.” Tomorrow I take Tuni back for a more thorough testing under sedation. And then we will talk… as the doctor put it.

So much goes through my mind. Is it fixable? What will it cost? How will we manage it all? I dare to even think, should we do it? And then I get mad at myself for even asking. I think about her family. Maybe this is why they abandoned her. Maybe they couldn’t afford treatment. Maybe a mother is mourning. Or, maybe it was just the Down Syndrome… but they did put her in the hospital. I hold no judgments any more. This is a harsh place with harsh realities. You don’t take a child to a government hospital unless you have no other alternatives.

This work has changed me too. I now more easily see the person separate from the illness. When I hold her and talk to her, I ask her, “What happened to you, Little One?”

Looking worried… with reason.

Good night from Kolkata at 12:50 am. I need to get some sleep before the day begins. Lots on my mind….

From the beginning, I have wanted to work with the government, particularly regarding the institutionalized children. I don’t know why the CWC’s attitude changed. I do know that currently they are desperate and overwhelmed, and they have always been angry that I wouldn’t take more.

The visit was beautiful. We did the formal things that are expected. The girls presented flowers to each guest. Each did Pranam, the touching of an elder’s feet. One of the girls presented her embroidery work, framed, and another presented her artwork, also framed and inscribed to the CWC.

Our girl presents her artwork to the Chairwoman

They toured the house and I insisted they see inside of the bathroom.

They noticed the fire extinguishers and said they’d not seen them before in a home. Seema Gupta took them upstairs while the Chairwoman stayed down in my office to talk. I had put my three published books out on the table and showed them to her. I told her that clearly I had a lot of help here, but that I carried the full burden, that I have to think about what I can manage.

They had come with an agenda. The Chairwoman said they can offer all sorts of assistance to expand the building, or to build a new home. But they also have an immediate problem, namely four very young children with disabilities who are in various hospitals in one of the districts that has no functioning CWC. The others came downstairs to rejoin us and talked more about the problems they are facing. They talked of their pain in visiting the children in the institution. There is a paralysis here… something I noticed years ago. Some people really do care, but they don’t know what to do.

Tabla and Talking in the CWC meeting. One of the members plays and was thrilled that our girls are learning tabla.

I said I would help. I said I would take the four children, but that I also then wanted two more without known disabilities. We have to stay inclusive. As we were talking, the girls on their own started to dance, and we went to watch them.

The Girls Decided to Dance

The CWC hoped Seema and I would come back to the office with them, and review the information on the four children. I found that two of them are too sick to be cared for in a non-medical facility. We agreed to take the other two, one an infant with Downs, and another with CP, about 2-3 years old. Then I reminded them that we will take two little girls with no known disabilities, that we had to remain inclusive. Right now there are many children in the institution. Their care is horrible. I can’t do as much as I want but it was just too painful to say no. And I do believe we will be expanding. We have to.

Sometime within the next week, the children will be brought to CWC for us to pick up.

Before that we were told we would be investigated for violation of child labor laws because of a complaint by an adolescent who had become too violent for us to manage. On Friday, Seema Gupta, our Board Vice-President stopped in at CWC to find out the disposition of the girl who had made the complaint against us, as she was still officially on our roll.

Then the officials asked Seema, “Would Madam please take more children?” and Seema explained that we have no room or resources for more. Then they asked, “Would Madam build a home for boys with disabilities? We have the funds! We would help her do it!” Seema said they had to visit first because only then would they understand what Shishur Sevay is. So they are coming tomorrow. We will pick them up and bring them and then take them back. Seema will take the day off from work. The girls will stay home from school. But it’s not about what’s wrong with us. It’s about their wanting help. They do remember when I brought the boys from Aunty’s Home and they had no place to put them. They still don’t.

Would I do it? I will if I can make it good, as it should be, and inclusive in some way, and with lots of recreation. I think that’s one of the worst problems for children with limited mobility and other disabilities. They don’t get to wear themselves out with fun, exercise, etc. I want a pool, enough for them to experience weightlessness…..

I’m a dreamer. I’m already planning it in my head, thinking about building plans and accessibility. I already looked up construction costs for commercial buildings…. I would have two wings though, for boys and girls, but for the lower ages I’d keep them together.

I want to start with an advisory group of people with disabilities….

I’m so glad I put down the outside tiles. I’ll have more pictures later on but instead of ramps looking separate, they just blend in, and look like rolling surfaces. Before we chose the tile, we had Sudip try out several, with water over them, to see which ones gave his crutches the best grip.

The “client” should always be the end user. Schools should be built to meet the needs of students, hospitals to meet the needs of patients, Shishur Sevay to meet needs as we discover them, and then find the best solutions.

Well, this may all be too much for the people coming from CWC, but I’m fired up and looking for ways and funds to make such a thing happen. I like the idea of building what is needed, as defined by the community. But just in case anyone is worried, Shishur Sevay and the life of the girls, of our family will also continue. This is home, my home and theirs.

Outside feels part of the house now, a nice place to be, to play… safe from slipping.

Ready for School, with her bag and her sister’s shoes.

Well, you can see the tiles! On the left, the black area is Jelly, the dog. Actually the side there is flat for her bed. Before we made a bed for her she would stretch out across the entrance, even when someone in a wheelchair was trying to go through.

Tiles going up, across, and down.

I love what we have been able to do. I’m looking forward to the visit. I’ll let you know how it goes. I’m prepared for the best and the worst. It’s just how life is.